Rare disease communities welcomed me as a researcher, inspired me to highlight their ingenuity in my book, Rebel Health, and now I am honored to share results from the first probability-based national survey to measure the rare disease population. I partnered with my former Pew Research colleague Kristen Purcell, now at SSRS, to write the […]
ARCHANGELS
Wow! How? Ring Theory
The swirl of holiday parties, family gatherings, and gift shopping expeditions (online and offline) have me feeling overwhelmed. And I know I’m not alone. Thanks to the 2023 ARCHANGELS Caregivers & Holidays Survey we have data on a key group of people: Take a moment to think about who in your life is going through […]
Caregiver starter pack
We usually don’t get to choose when to become caregivers. A crisis hits and we are dropped into a maze populated by scary monsters, like family conflict or financial ruin, and no guides. This happened to a friend of mine recently and, when her loved one’s situation stabilized, I sent her 3 things: 1. A […]
Public Q&A: Human-centered design
A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]
The Next Big Thing in Health
This week I was a guest on the Next Big Thing in Health podcast (listen here or wherever you get your podcasts). I thought I’d share links to some of the people and resources I mention: ARCHANGELS WORK helps people translate the skills and experiences they acquired as caregivers into talking points for a job […]
Caregiving is not a “career break”
LinkedIn recently announced a new feature: the “career break.” Users can choose from 13 different types of time away from paid work, such as bereavement, career transition, caregiving, full-time parenting, a gap year, or travel. It is a big step forward. But I want more. I want caregivers to be recognized as essential members of a health […]
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